A Breif History of Leprosy

For thousands of years leprosy has struck fear into people the world over. It was well recognized in the oldest civilizations of China, Egypt and India and it is generally claimed the first clear and accurate description of leprosy was in India about 600 BC (Davey, 1987: 15; WHO, 2003). The Leprosy Archives in Bergen, Norway, however, say that leprosy is mentioned in sources from Egypt from as early as 1350 BC (Nedrebǿ, 2001). There are several references to leprosy and the word ‘lepers’ in the Bible with Leviticus, the third book of Moses, referring to the disease as a plague and giving rules on how to behave towards ‘lepers’. The New Testament showed Jesus demonstrating considerable mercy and special concern towards people with leprosy, who mother people despised. Although the Bible refers to leprosy, far earlier than the first Indian description, there remains conjecture as to whether it was in fact leprosy as it is known today or a word used to describe any number of unpleasant skin diseases (Davey, 1987: 15).

Leprosy was rampant during the 13 th century in Europe (WHO: 2005a). Evidence of this is built into gothic churches in Europe and Britain; The so called’ leprosy squint holes’ through which the person with leprosy would peer and watch the priest at the alter celebrating mass. Prior to this, a service of expulsion would have taken place, with the leprosy affected person shrouded under a black cloth and the mass of death read followed by a list of prohibitions: never again to enter a church, a house, a tavern or a market place ;or to walk through narrow lanes or speak ‘down wind’ to anyone; Never to speak with children; Always to wear a ‘leper’s’ uniform, which included gauntlet gloves, and a ‘leper’ warning given either with a ‘leper’s bell’ or ‘leper’s rattle’ when approaching other people. For all practical purposes the person with leprosy was ‘dead’ to society (Davey, 1987: 16). By the 17 th century, Norway and Iceland were the only countries in Western Europe that had large numbers of people with leprosy.

Three Key Men: Hansen, Bailey and de Veuste

During the 1830s there was a considerable increase in numbers in Norway with the situation becoming a political issue. An important breakthrough in leprosy research took place in Bergen in 1873 when Norwegian, Gerhaud Henrik Armauer Hansen, discovered the leprosy bacillus ormycobacterium leprae (M.leprae). This discovery was the first time a bacillus and a disease were clearly linked making Hansen world renowned (Davey,1987: 30). The evidence was clear: a bacterium causes leprosy, it was not hereditary, a curse, or from sin. Since then the disease has also been known as Hansen’s disease with many people preferring this term because of the negative connotations associated with ‘leprosy’. Historically people with the disease were referred to as ‘lepers’, but this term is now widely rejected and classed as insulting and offensive because of the pejorative meanings associated with it. At the same time Hansen discovered M.leprae in Norway, Wellesley Bailey, an Irishman, was encountering people with leprosy in India. So affected was he, by what he saw, Bailey returned to Ireland determined to make a difference – somehow. In 1874, in Dublin, what is know today as The Leprosy Mission was born. Wellesley Bailey returned to India to begin work but it was an uphill battle. The government of India’s 1898 Leper Act decreed that beggars with leprosy be treated as criminals requiring compulsory segregation from society, and district magistrates were given powers to commit them to authorized establishments (Davey, 1987: 50). Also in 1873 a Belgian priest, Joseph de Veuster, who was a missionary in Hawaii, sailed from Honolulu to Molokai, the island of death where the United States Government enforced people with leprosy into isolation. No one who went there ever left. Sixteen years later, de Veuster himself died, having become one with those he went to serve. His famous words “we lepers…” (Eynikel, 1999: 91) were prophetic as eleven years into his self imposed exile he himself discovered he had leprosy. He is now remembered as Father Damien.

These three men, unknown to each other, were key figures in the struggle against leprosy in the latter part of the 19 th century. Their pioneering spirits combined with a strong quest for justice formed a solid foundation from which leprosy work today continues to benefit. This is clearly an early challenge to leprosy related social exclusion and human rights abuses.

Complexities of Leprosy

Even although leprosy has been known about for centuries, the mode of transmission remains uncertain. The fact that it is caused by a bacterium, M.Leprae, which multiplies very slowly ,means there is a long incubation period of five to fifteen years making research into transmission difficult (Lockwood, 2004: 269). Many researchers are of the opinion it is spread from person to person in respiratory droplets by coughing and sneezing, but this is not scientifically proven. Humans seem to be the only natural host of M.Leprae with the exception of the 9banded armadillo found in parts of Central America (WHO, 2004).

Leprosy and its Treatment

The outworking of M.Leprae is known as tuberculoid leprosy and first seen as pigmented patches on the skin usually accompanied by loss of feeling. Further symptoms become evident as M.leprae attacks surface nerves in cool parts of the body, and areas such as hands and feet gradually experience loss of feeling also. Subsequent injuries occur because of lack of pain and often go unnoticed for some time with permanent deformity and disability resulting. Left untreated, leprosy will continue to destroy nerves causing anesthesia, and once lost, feeling will never return, meaning prevention of disability becomes a lifelong battle. A worse form of the disease is lepromatous leprosy which is very infectious. Here M.leprae multiplies at a steady rate and infiltrates the skin producing unsightly nodules on the face and body.

From the early 1900s to the late 1940s, leprosy was treated by giving injections of oil from the chaulmoogra nut. While this appeared to work for some people, long term benefits were questionable. Dapsone pills were used during the 1950s but disappointment followed when M.leprae began developing Dapsone resistance (Davey, 1987: 61). Drug trials on the island of Malta in the 1970s led to an effective combination of drugs and in 1981 the World Health Organization recommended MultiDrug Therapy (MDT). The combination of Rifampicin and Dapsone (known as paucibacillary multidrug therapy or PBMDT) Over six months or the triple drug combination of Rifampicin, Dapsone and Clofazimine (known as multibacillary multidrug therapy or MBMDT) Over twelve months were highly effective in curing leprosy (Lockwood, 2005: 230). This cure was a major breakthrough.

A Social Disease

Today leprosy is generally recognized as a disease exacerbated by poverty, poor nutrition, hygiene and sanitation (Buckingham, 2002:17). Wilkinson (1996: 19) argues strongly that inequalities produce poverty and unmet social needs thus impairing health; There fore, perhaps leprosy should be seen as an affliction of an unhealthy society. Leprosy is also a highly stigmatised disease and the word ‘leper’ has a near mythical status as a synonym for extreme social exclusion (Silla cited in Kabeer, 2000: 5). The reasons for exclusion from society hark back to the history of leprosy and an inherent fear of the disease. Misconceptions including beliefs that it is incurable, hereditary or a divine punishment contribute to stigma (Rao et.al. 1996: 191) which in turn intensifies the social exclusion that inevitably follows.